Aingealag wrote:I feel good, I sleep better and although I still get BFS symptoms and the occasional hormonal pimple, I'm convinced that if I give things a little more time,

I'm so glad you are doing better, Wendy. I would expect your symptoms to improve over time, as they do with most people. Whatever you are doing to improve your overall health, keep doing it. Feeling better, in general, reduces anxiety which usually helps with symptoms (directly and indirectly). If you don't already, regular exercise has worked for me and many others as well. Thanks for checking in!

Sorry to "renew" an older thread. But, I'm completely on board with BFSBurger.

My first symptom was not twitching... it was numbness. My right pinky and ring finger just went out on me one day while sitting at work. I was hard and heavy into working out and thought I trapped my ulnar nerve. I went and saw an orthopedic doctor. Since I had no loss of strength he felt it was just something transient. Then, the same elbow started aching really bad. I also started to twitch on and off in those fingers and elbow area. Then the problem shifted to my left hand (no twitching). I also started to notice a thick skinned feeling on my thumbs and index fingers. I would wake up at night with my pinky and ring fingers completely asleep. I was so perplexed... how could I develop ulnar and median nerve issues together so fast!? I was constantly applying ice packs on my elbows, sleeping with arm splints, etc. I went back to the same orthopedic doctor and again, since I had no loss of strength he felt it was nothing to worry about. Then, a few months later my left shin went numb on me. Lasted about two weeks. No weakness. Just felt a little weird walking. I was constantly internet searching for causes, reasons, treatment, etc. I was freaking out because I had been so healthy all my life. Over time, my ulnar related issues almost completely went away by just keeping my arms straight. I still had a ton of stress in my life (first baby on the way, government furlough). BAM... calf twitching while laying in bed. I will never forget the moment. My anxiety was the highest it has ever been in my life and all my symptoms went full blown. Jello legs, face numbness, eye pain, wicked fatigue, balance issues, light dizziness, hip pain. I bought 4 books on MS... I was convinced I had MS. I even remember the Barnes and Noble lady asking me if I wanted a gift receipt for all my MS books... I said it unfortunately wasn't for someone else. I finally got to a neurologist. She wasn't concerned as I passed a neurological exam. Still, she ordered bloodwork and a brain MRI. My brain MRI came back fine. My B6 was 4 times the upper limit. I was taking a lot of supplements while working out. I'm convinced B6 messes with us. I don't know if we process it improperly or what.

Here's why I believe in a comprehensive lifestyle change covering diet, stress, and exercise. Most of my research was MS focused, since that's what I thought I had. Anyone that has been successful managing that serious autoimmune disorder drastically changed their diet. Look up Swank, McDougall, and Paleo diets. The goal is to reduce inflammation. I’m convinced we are what we eat. I changed my diet rather swiftly to McDougall. I cut out the B6 supplements. I even avoided B6 in foods. I noticed a lot of my nerve issues got better… SLOWLY. No more balance issues. No dizziness. Reduced fatigue. Overall improved health. I was sleeping better. Better digestion.

The one thing I haven’t been able to overcome is fear and anxiety. While my symptoms got better, I was still concerned my neuro wasn’t as comprehensive as she should have been. Why not a spine MRI? Why no contrast? Why no EMG? And you know what… my penchant for getting on Google and looking up symptoms has really come back to bite me. Throughout all of this mess, I never came across &LS or even BFS. But then, I found these forums, but also the &LS forums. I started to question my strength. Do I have clinical weakness? Is it just bad fatigue? I now find myself doing strength checks MULTIPLE times a day. I’m always pinching my fingers together. I'm always clinching my fists. I’m always rotating my wrists. I’m always picking things up just to prove to myself I can. Guess what? My symptoms are worse than ever. Body wide twitching… no muscle exceptions. Each morning I wake up and all four limbs feel SO tired. My hands are stiff and achy. Random shooting pains in my fingers and toes. My right pinky started to go out on me again. My forearms ache. I’m constantly walking on my tip-toes and my heels to make sure I don’t have foot drop. Well wouldn’t you know it… now those areas feel weak and I get tingling in my left leg with just about every step. My twitches are almost directly related to my stress level. When I first wake up… nothing… as I lay in bed pondering my symptoms and how I feel… things start firing. My calves, then some place in my arm. My temple. My eyelid. If I drop a Klonopin… reduced twitching. Bottom line… all my sensory symptoms and transient on / off symptom nature should tell me this isn’t anything serious. MS doesn’t do that &LS doesn’t do that. I don’t have good days and bad days. I have good hours and bad hours. All days are pretty mediocre. Lol… Still… I can’t get it into my thick head that 6 months into this, I would’ve already developed some obvious clinical weakness if I had the three star ***. If I had MS, I wouldn’t have numbness come and go so fast. I don’t have any digestion problems. No increased urination. No eye issues. No stuttering. My gut is finally starting to tell me to chill out… it’s got to be in the benign NMT / PNH / BFS / CFS world. Still, that shred of doubt enters back in when something changes. Like Burger, I just need that EMG.

Back to my point. If others are successful at treating MS with dieting, supplements, exercise, then I think we should look into a similar course of action as our nerves are overactive. Anything that inflames our gut will inflame our nerves. Over-exercising creates stress on our bodies. Stress toxins and horrible. So many of us get caught in the nasty circular anxiety.

It’s not easy. Results show up slowly. But, be persistent. Give it time. I just know that when I was doing a good job eating right, reducing stress, and staying off the internet, my symptoms were better.

I also struggle with the pinky ring finger numbness every morning upon waking on both hands, but the neuro wasnt too concerned. I've actually emailed my neurologist a couple of those questions and I guess I'll post the transcript of our conversation so others who have similar questions can also review it:

Me:

I had some questions to ask you at our appointment a couple weeks back, but for some reason some of them slipped my mind. Recently I've been experiencing a lot of pressure under my rib cage, at first it was my left rib cage, now it is my right. It feels like the muscles are constantly cramped. I read about the MS hug and I am not sure if these are related. I also read these pains are caused by lesions on the spine, but I did not receive a spine MRI. Are these just aches and pains, or is there something to it? Any advice on this is much appreciated

I also had a doctor tell me it takes 2 years to diagnose MS, yet none of the neuro's Ive seen have said anything about that. Is that true as well? Sorry for the very broad and general questions, just trying to get a better gauge on what is going on with my body right now.

Neuro response:

Pressure under the rib cage is a very non specific symptom and not a symptom I would think comes from the spinal cord.From what I reviewed you have not had symptoms from the spinal cord previously and since your exam was normal and spinal cord problems always show up on exam you do not need an MRI of your spine.I have no idea why someone would say that multiple sclerosis takes 2 years to diagnose. I have diagnosed patients on their first visits and other patients perhaps up to 6 months later. This makes no sense.Relax man. You are young, smart and have your whole life in front of you. Enjoy it.

I think the last few sentences from your neuro summed it up for a lot of us... Relax man... enjoy life... you have a lot to look forward to. This is our strategy to overcoming and managing this "syndrome." Even today (and quite frankly the last few weeks), I've had this nagging numbness / tingling in various areas in my left leg. It started around my ankles, then moved to the front of my shin, then the back of my calves... now when I walk I get this tingle up and down my entire leg. But, it's not always there. It's kinda positional or if I walk a certain way. But, I've come to the "screw it" mentality. I went running with my dog yesterday for a good half mile despite the feeling, so if I had a serious problem there would be no way I could do that.

1) Do you still believe the supplement list you provided is crucial? I bought all you recommended, except the B complex without B6. I do have a methyl B12 (5,000mcg). During my first round of bloodwork, my B6 was 4 times the upper limit. So, I've avoided B6 as much as possible. I haven't started the supplement list you provided as I had to stay off vitamins for my 6th round of bloodwork drawn yesterday. When I start the supplements, should I introduce one at a time and see how I do for a few weeks or just start taking everything?2) Have you done much research regarding copper? My fifth round of bloodwork showed my B6 was back in range, but my copper was low (still in range). I saw a few posts from folks noting that copper provided improvement. I came across an article documenting copper treatment in various neuropathies - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077729/3) Regarding Gatorade - I gave it a shot and noticed a reduction in twitching. Do you think something like V8 would be a better alternative sugar wise? It's loaded with potassium.

I think that's it for now. I'm well down the road of following a paleo diet, light exercise, sea salt baths. The anxiety comes and goes with each new test my neuro orders. I've had clear brain MRI, nerve conduction study, and EMG. But, this latest round of bloodwork has her looking at Hepatitis B / C, HIV... all sorts of scary stuff. I figured if I had anything like that I would feel SICK! But, overall my health has been outstanding. Just BFS symptoms galore.

1) Do you still believe the supplement list you provided is crucial? I bought all you recommended, except the B complex without B6. I do have a methyl B12 (5,000mcg). During my first round of bloodwork, my B6 was 4 times the upper limit. So, I've avoided B6 as much as possible. I haven't started the supplement list you provided as I had to stay off vitamins for my 6th round of bloodwork drawn yesterday. When I start the supplements, should I introduce one at a time and see how I do for a few weeks or just start taking everything?2) Have you done much research regarding copper? My fifth round of bloodwork showed my B6 was back in range, but my copper was low (still in range). I saw a few posts from folks noting that copper provided improvement. I came across an article documenting copper treatment in various neuropathies - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077729/3) Regarding Gatorade - I gave it a shot and noticed a reduction in twitching. Do you think something like V8 would be a better alternative sugar wise? It's loaded with potassium.

I think that's it for now. I'm well down the road of following a paleo diet, light exercise, sea salt baths. The anxiety comes and goes with each new test my neuro orders. I've had clear brain MRI, nerve conduction study, and EMG. But, this latest round of bloodwork has her looking at Hepatitis B / C, HIV... all sorts of scary stuff. I figured if I had anything like that I would feel SICK! But, overall my health has been outstanding. Just BFS symptoms galore.

Thanks.

i would avoid B6....mine was also 4-5 times high on blood work repetitively and this can cause issues. you might try magnesium oxide supplements....i have had good results dosing 500mg three times a day....if it gives you the runs your dosage is too high....it took about a month but a month of 1500mg has reduced symtpoms for me on top of a lot of other stuff...I am 80% better than I used to be.

"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948

1) Do you still believe the supplement list you provided is crucial? I bought all you recommended, except the B complex without B6. I do have a methyl B12 (5,000mcg). During my first round of bloodwork, my B6 was 4 times the upper limit. So, I've avoided B6 as much as possible. I haven't started the supplement list you provided as I had to stay off vitamins for my 6th round of bloodwork drawn yesterday. When I start the supplements, should I introduce one at a time and see how I do for a few weeks or just start taking everything?2) Have you done much research regarding copper? My fifth round of bloodwork showed my B6 was back in range, but my copper was low (still in range). I saw a few posts from folks noting that copper provided improvement. I came across an article documenting copper treatment in various neuropathies - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077729/3) Regarding Gatorade - I gave it a shot and noticed a reduction in twitching. Do you think something like V8 would be a better alternative sugar wise? It's loaded with potassium.

I think that's it for now. I'm well down the road of following a paleo diet, light exercise, sea salt baths. The anxiety comes and goes with each new test my neuro orders. I've had clear brain MRI, nerve conduction study, and EMG. But, this latest round of bloodwork has her looking at Hepatitis B / C, HIV... all sorts of scary stuff. I figured if I had anything like that I would feel SICK! But, overall my health has been outstanding. Just BFS symptoms galore.

Thanks.

i would avoid B6....mine was also 4-5 times high on blood work repetitively and this can cause issues. you might try magnesium oxide supplements....i have had good results dosing 500mg three times a day....if it gives you the runs your dosage is too high....it took about a month but a month of 1500mg has reduced symtpoms for me on top of a lot of other stuff...I am 80% better than I used to be.

I was taking 400mg chelated magnesium / day. It did give me the runs. Now, I use a topical magnesium lotion made by the same folks that make Epsom Salts. It was recommended over on the neurotalk boards. Not sure If I'm finding much relief with it though. I may switch back to the oral intake even though it upset my stomach. I just need to find the right dosage.

Wow...I don't know if I could do this! O_O Props to you, though! There is so much I would have to cut out, and I'm also a college student who barely has time or money for anything else anymore, and I already know I don't get enough rest. But, alas...anyone who has experienced college will know what I'm talking about.

"For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind."2 Timothy 1:7